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Thanks to decades of research in Alzheimer's disease (AD), we have a better understanding today of the underlying pathology, the course of progression, and the importance of identifying AD's first clinical manifestations.1,3
These research findings now need to be translated into clinical practice. Health care systems are required to provide resources at both the primary and secondary care level to inform an effective referral process for timely diagnosis. In addition, resources are needed to allow physicians to better care for their patients and care partners in a holistic way.1,4,5
Individuals with a cognitive complaint present to specialist like neurologists, psychiatrists, and geriatricians. However, the General Practitioners (GPs) or Primary Care Providers (PCPs) are often the first point of contact and thus play a key role to detect, disclose, and evaluate a cognitive complaint or an at-risk situation.4 Establishing a clinical diagnosis of AD is a stepwise process that is often a shared responsibility between GPs/PCPs and specialists.1,2,6
This section is intended to support Healthcare Professionals in their person-centered approach by providing suggestions on how to engage with patients before, during, and after a diagnosis of AD at the early disease stages.
Engaging with Patients in the Early AD Disease Stages
Empowering HCP-Patient Dialogue
It is never too early or never too late for evidence-based prevention of cognitive decline. Physicians can play a key role in empowering their patients to gain greater control over their brain health and to implement appropriate lifestyle changes that could prevent or mitigate the risk of dementia throughout their life. This strategy also highlights the need for increased awareness of Alzheimer's disease, supported by both public health programs and individually tailored interventions.5,7
An open dialogue between HCPs and their patients, along with disease awareness can help tackle stigma and fears associated with Alzheimer's disease. The stigma of AD may prevent people from talking with their doctors about their cognitive complaints.8
One proposed strategy to foster an accurate understanding and identification of early signs of the disease is to include the monitoring of cognitive health during regular check-ups. For example, special attention should be paid to those patients in consultation due to a chronic disease known to be associated with an increased risk of developing AD, such as diabetes, heart diseases, or a history of stroke.9
How to Engage with Patients on Brain Health Discussion
If possible, the patient and the informant (i.e., relative, care partner) should be asked about subjective cognitive complaints.10
A subjective cognitive decline (SCD) is the self-perception of a persistent decline in cognitive capacity and/or neurobehavioral disturbance compared with a previous normal cognitive status:10-12
A subjective cognitive decline (SCD) is the self-perception of a persistent decline in cognitive capacity and/or neurobehavioral disturbance compared with a previous normal cognitive status:10-12
- Ask about memory disorders, word finding disorders, or problems with spatial allocation.
- Ask about a typical day and if there have been any changes in coping with everyday activities, such as cooking simpler dishes or being overwhelmed quickly with unforeseen things.
- Ask about mood swings or a change in personality.
- Observe word-finding pauses.
- Evaluate the informant's reliance, i.e., care partner for responses.
Assessing Cognitive Function
The essential elements of a comprehensive cognitive evaluation include assessment of diverse cognitive domains, patient functionality, and behavior.6,13 Several brief assessment tools for screening and monitoring cognitive health in clinical practice are available and should be used where possible.14 Cognitive assessment tools can be grouped into two different subtypes: subjective assessment tools and objective cognitive assessment.
Cognitive Assessment Tools12,13
Subjective Assessment Tools
Subjective assessment tools are questionnaires which can be completed as self-report or informant-report (e.g., by the care partner) via interview or self-administered, i.e., in the waiting room prior to the physician visit.
Subjective tools use an intra-individual measure of change to characterize whether cognitive decline has occurred and how that decline interferes with social and occupational functioning.
Since the person serves as their own control, these tools are less subject to age, gender, racial, ethnic, cultural, educational, or socioeconomic biases. In addition to cognition, some tools also cover behavioural, and functional aspects.
Objective Assessment Tools
Objective cognitive performance assessments are administered by a Healthcare Professional to assess the cognitive performance ability of the individual.
Existing tests screen the amnestic domain alone or in combination with non-amnestic domains and rely on inter-individual norms.
Combining performance, informant- , and self-reports is an efficient approach to greatly enhance the ability to capture early cognitive change, and inform further assessment of the main cognitive domains.15,18 Such a screening approach is recommended in primary care settings to facilitate recognition of cognitive impairment, to support differential diagnosis, and to more accurately inform an individual care strategy.1,14
The informant- or self-report questionnaire “Eight-item Interview to Differentiate Ageing and Dementia” (AD8)19 can, for example, be combined with the cognitive screening tool Montreal Cognitive Assessment (MoCA).20 The self-administered AD8 and the HCP-administered MoCA are the top two validated screening tools with the highest administration efficiency, (i.e., number of cognitive domains tested per minute) and sensitivity to detect individuals with mild cognitive impairment.20-22
Considerations when using short
cognitive tests
AD8 & MoCA
The AD8 test is a short “yes/no” questionnaire where the patient or informant rates subjective changes about memory, orientation, judgment, and everyday function.22
MoCA test is the most sensitive screening tool for MCI due to potential AD because it addresses additional frontal-executive function domains not commonly found in other brief performance tests.20
The recommended complementary approach to combine different sources of information to improve MCI diagnosis has triggered the validation of several screening tools, integrating objective cognitive performance assessment with subjective self- or informant-reports.15-17
GPCOG – The General Practitioner Assessment of Cognition
The GPCOG is an online screening tool for cognitive impairment which has been designed for general practitioners, primary care physicians, and family doctors. The GPCOG score is not influenced by the cultural and linguistic background of a person, making it an invaluable screening tool especially in multicultural patient settings.15
After confirmation of the MCI clinical criteria and exclusion of other medical causes, a biomarker evaluation of amyloid beta is a minimal requirement to confirm Alzheimer's disease.31,32
Disclosing AD Diagnosis
Stigma, fears, and negative stereotypes associated with AD may predispose people to not accept a confirmed diagnosis or a suspicion of AD.2
How to Disclose a Diagnosis of AD or Suspected AD
- An open dialogue with the patient is important to help overcome Alzheimer’s disease prejudices and fears. Therefore, the question is not “if” the diagnosis should be disclosed, but rather “how” and “when” to do so. It was reported that among distressed patients and care partners, anxiety often decreased after being told the diagnosis.14
- Disclosures should be individually tailored: it is central to assess the patient and relative’s mood and level of understanding about Alzheimer’s stages.14
- It is important to take into consideration that people with subjective cognitive signs who seek health care generally prefer active strategies and certainty about their diagnosis and prognosis, even when effective drugs may not be available.35
Post Diagnosis Support
Supporting patients in a holistic way includes disease education and a close collaboration with the patient and their care partner, and between primary and specialized care. This in turn can help to increase adherence to the medical strategy.8
How to Support Patients and Care Partners after Diagnosis
- Educate the patient and relatives about Alzheimer’s disease stages. Raise awareness that at early AD stage (MCI) the disease is not impacting basic activities of daily living (ADL); however, when the disease progresses to AD dementia functional decline can impact ADL.8
- Discuss associated benefits of early detection, such as earlier access to cognitive stimulation and brain health interventions. Cognitive stimulation, reality orientation, reminiscence therapy, and music therapy may be beneficial in addition to evidence-based recommendations on lifestyle behaviours and interventions to delay or prevent cognitive decline.2,36-39
- If appropriate, discuss symptomatic treatments and management of comorbidities or behavioral abnormalities, such as depression or agitation.32,40,41
- If feasible, provide multidisciplinary support for the individual’s psychological, social, legal, or supportive care needs.8
- Pay attention as well to the relative’s needs: Relatives supporting AD patients play a critical role. At the beginning of the disease, patients function independently. The role of relatives is to be care partners providing psychological support to accept the diagnosis and to help plan for the future. The level of care provided by carers will increase as AD progresses. Decide when it is time to advise on available support via Alzheimer’s patient organizations and additional resources.42
- Schedule for regular follow-ups to monitor disease progression and to further decide upon appropriate interventions.8,13
In conclusion, a timely and accurate diagnosis of Alzheimer’s disease can lead to the initiation of interventions when they might be most effective to benefit patients.13
When communicating about diagnosis and intervention options, Alzheimer’s disease, like other neurodegenerative diseases, requires gradual information over a period of time suited to the recipient’s personal characteristics.34,35
WHAT'S NEXT
Alzheimer's Disease and Brain Health Preservation
Lifestyle interventions, including social and cognitive activity, may help preserve brain health.
References
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